The “cancer scare” & how it is (and could be) shaping our culture

I’m interested in the cultural role of the “cancer scare” — how it affects the courses of human lives, how those lives affect other lives, and how all this shapes our institutions. For instance, why does it seem necessary to me to put “cancer scare” in scare quotes? It’s a real life event, but it’s still held it at a distance, as if we’re wary of whether it’s real.

I have had two cancer scares, one when I was 14 (when a chest x-ray revealed a mass around my heart that looked like lymphoma) and one last year. The most recent one is why I started Death School. I was sitting on the porch, recovering from surgery to remove two mysterious “masses” from my abdomen, waiting to hear the biopsy results, and I joked to my partner that what college students really need to learn about is how to die — a course in different cultures’ attitudes toward death, ways individuals have conceptualized death and its role in their lives, and some kind of project to help students better understand their own concept of death. He didn’t think such a thing had to be a joke, and we started talking more seriously about how a death school would look.

Preparing for surgery, I filled out an advance directive. Doing this effected a big shift in me. To complete the forms for the hospital, I had to think realistically about my own dying process and death. Under what circumstances would I want to be given food intravenously? For how long would I want to stay on life support, if at all, if my body showed no signs of being able to support its own functions? Who would make the decision to remove life support? Would I want anyone affiliated with any religion present at my hospital bedside when I began dying? Without knowing how I would answer these questions, doctors (people I don’t know and who don’t know me) would have to do what they thought best for me.

I wanted to have some say in how my own end could look, but for weeks I was afraid to fill out the form. I found it online and then closed the window. A few days later I went back to the site, looked at the link to download the form, and closed the window. This went on and on. I did not like the bureaucratic look of the form one bit, and the fact that it was asking me questions about my own death made it seem more dreadful and impossible to ever approach.

Eventually I was able to print the form, to put it in a pile on my desk, and to ignore it. Then one afternoon when I happened to be feeling calm and brave, I started filling it out, and that was when something shifted for me — it’s hard to articulate, but it had to do with understanding that death really is inevitable, and that it really does feel better to engage with the truth about death. Then, it’s much easier to think about death in a calm way. When I’m calm, I can see that death is something I share with all beings alive right now.

Anyway, I filled out the form and had my partner and two road-tripping friends who were staying with me sign it as the legal witnesses. It felt good to share this weird bureaucracy-driven experience of death planning with some of the people who are closest to me. Planning for my own death made me feel powerful in a way I had never felt before. The feeling of power didn’t have to do with a sense of control — I knew, given all the possible scenarios of my exploratory surgery, how little I could control about the process. Rather than a sense of control, I had a sense of giving up trying to control something I never had control over to begin with. I could reclaim that energy and use it to draw close to me the people and ideas and memories that are important to me, and that sustain my life in their own ways.

(This — drawing together people and ideas and memories — is what is motivating Death School right now. It feels a little impossible to be undertaking such a thing — I have lots of doubts about myself and about how all of this is going to work — but I am trying to see this as a life’s work, not a quick project, of staying engaged with what matters to me and of learning about what matters to all of you.)

I got a report of “benign” from the lab on my biopsy. This was a cancer scare, not cancer. We hear a lot about cancer and its effects on individuals and policies, and of course there are good reasons for that — cancer is crazy and devastating and we don’t really understand how it works. In addition to the attention we give to cancer, I wonder what would happen if we started to talk more about what the scares mean, and what they could mean. They could mean an open dialogue about the ways individuals try to face death in a culture obsessed with youth and health. They could mean people coming together rather than individuals trying to be silently strong. They could mean a chance to step out of your life to look at what is happening and where it all seems to be going, and to decide if you want to keep going that way. A scare could be a reason to change.